For mum Leanne Lilywhite it was an impossible decision of her life: if you have another baby it could be the death of you.
She was told she might be risking her life if she had another child – but decided to take the gamble.
Diagnosed with an extremely rare disease which progressively destroyed her lungs, medics warned her that pregnancy could seriously risk her health.
After the birth of her baby girl in April 2015, Leanne’s lung function had dramatically plummeted.
Once able to run the Birmingham half-marathon, she now got out of breath carrying the washing basket upstairs.
But, desperate for a big family, she and husband James decided to try for another baby.
After two years of heartache including a miscarriage, miracle baby Oliver was born in September.
“I was advised not to have any more children after my daughter Isemay was born,” says Leanne, originally from Aldridge.
“But I’d always wanted a big family, and watching those around me growing their families without a care in the world was incredibly difficult for me.
“I knew I couldn’t spend my life thinking ‘What if?’”
“I knew I couldn’t be happy without trying, and I was actually getting quite depressed.
“To have to choose between your health and your family seemed incredibly unfair at times .
“But I just knew that I couldn’t spend my life thinking ‘What if?’, so I made the risky decision to try for one more child.”
Leanne first became ill in spring 2012 when her lung collapsed while on holiday in Devon.
She was struggling to breathe and, convinced she was having a heart attack, husband James phoned an ambulance and she was rushed to hospital.
Tests revealed she had a collapsed right lung, and medics thought it was just a ‘one-off’.
But a year later Leanne’s lungs would collapse five times in just a fortnight, and she was finally sent for a CT scan.
On Valentine’s Day 2013, Leanne was diagnosed with extremely rare lung disease Lymphangioleiomyomatosis (LAM), which affects just a few hundred people in the UK.
“It’s so rare that when I was diagnosed, the doctor at the QE Hospital was reading the information off a Wikipedia page he had printed out,” explains Leanne.
“It was really scary, and I was on my own. It said that I had about 8 to 10 years to live, which was pretty grim. It was a miserable few weeks.
“But then I was referred to Professor Johnson in Nottingham, who is just about the only LAM expert in the country, and I felt better talking to him.
Doctors warned having a baby could accelerate the condition
“But to be diagnosed with an incurable chronic lung condition at 30 years old was very hard.
“He advised me not to have children as the strain of pregnancy can make it worse, and the effects irreversible.”
Doctors warned that having a baby could accelerate the cruel condition, leading to severe breathing problems , and potentially put her life at risk.
LAM, which affects just 350 women in the UK, progressively destroys lung tissue and can cause severe breathing problems which, in some cases, requires a lung transplant.
In April 2014, Leanne underwent a painful operation to stop her lungs collapsing called a pleurodesis, in which her lung cavity was effectively ‘sand-papered’ and attached to her rib cage.
“It was just a few weeks before my wedding to James in the south of France,” recalls Leanne.
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“I was in a lot of pain and my weight had dropped to seven stone – my dress was a corset and wasn’t very comfortable .
“But it worked, and my lungs didn’t collapse again!”
Soon after the wedding, Leanne became pregnant with daughter Isemay, who was born in April 2015.
And despite having a normal pregnancy and birth, Leanne’s lung function decreased dramatically.
The 35-year-old was put on medication to stop the progression of LAM, and as her condition seemed to settle, Leanne began thinking about having another baby.
“We were advised against it, but I just knew I had to take the gamble,” explains Leanne, who Leanne is chair of the UK-based charity LAM Action.
“I had always dreamed of having a big family. The journey was painful. I suffered a miscarriage and then a molar pregnancy .
Putting her health on the line for baby Olly was worth it all
“That’s when you get all the symptoms of being pregnant, but the egg hasn’t become a baby and is just a collection of cells .
“I had to get it removed, which was horrific, then we had to wait another year to try again.
“I’d actually given up hope and started to accept that I would only ever have one child.
“That’s when I got pregnant with Oliver. I was so worried that we didn’t even tell anyone I was pregnant until 20 weeks.”
During the pregnancy Leanne supported her diet with vitamin supplements, was immunised against flu and pneumonia, and steered clear of people with coughs and colds.
The 35-year-old also kept active, walking the family’s two dogs and attending local spin classes.
“In the end, we got our healthy, happy baby boy and I seem to have come through things unscathed,” she says.
“Olly is our little miracle and we feel beyond blessed to have him, and Isemay is loving being a big sister – she’s really proud and loves showing him off.”
Leanne, who runs a home baking business, admits she gets breathless when she exerts herself, such as walking up hills or doing rigorous exercise.
Despite the risks, Leanne says putting her health on the line for baby Olly was worth it all.
“Not much is known about LAM and pregnancy, and for me the gamble was worth it,” she says. “My body seemed to cope a lot better the second time around.
“Hopefully, what I went through will help with understanding how to best manage your pregnancy , so that other women don’t have to face the awful choices our family had to.
“We took a gamble, but so far being a family of four has been pretty amazing – and I’d do it all again in a heartbeat.”
* For further information about LAM visit: www.lamaction.org
Source : BirminghamMail